I always like to be ahead of the game apparently. Couldn’t wait for the post climatic slide through January and February’s sludgy weather and skies to feel the cloying weight of bleurgh-ness. Can’t-be-arsed-ness. Bereft-of-f*cks-ness.

Today marks three months since the day RD left us. And in a cruel twist of life, it falls on a Monday again. I don’t like the fifth of the month- naff off Guy Fawkes, and I appear to have fallen like a Boomtown Rat, because Mondays are pretty much unlikeable. And that’s even when I get to palm DD off at nursery.

But really its the bigger thing that sits round the corner. That the shops start playing the tunes for in September. That as a retail buyer is on my mind in January. That some buggers now start putting their trees up in November for. I can’t even refer to it as the C word as that understandably has other connotations. So here it is: Christmas. The Carbuncle on my horizon. My social media feed full of anticipation, excitement and seemingly competitive edge for who can be more Christmassy.

We learnt six years ago, when there was zero chance my October born son was going to make it home from hospital for Christmas, to drastically change our expectations for the day. To stop throwing so much hope and anticipation its way. Because you know, its just another day, right? And yet I wanted Christmas to wrap me up and hug me with its promise of warmth, joy and goodwill to all men. Envelop me in the fug of too much food, booze, Quality Street and brussel sprout farts.

For four years of RD’s life we spent Christmas in or hovering around the hospital, with his fondness for using that time to throw in a bastard of a festive bug. So we stopped planning fun, tree decorating. Anything too jolly, as it felt ominous. Like we were jumping the gun. But I tell you something, RD caned it on the present front in those years. And they say there’s no connection…

But that was the other thing. He had no idea Christmas was a coming. He wasn’t making demands for a Hatchimal or a Cabbage Patch Doll. Writing a letter to Santa. Even show any interest in trimming the tree. He was always pleased to receive a new annoying plastic, bright, noisy toy. But we had to shift our focus on what eyes he saw Christmas through. On the other hand, DD has been asking since February when Father Christmas is coming.

But in the last few years, we have had the perfect storm of a Christmas. DD and her bright exuberance for everything Christmas related EVER, bar sprouts. RD got his Scooot. For the first time, aged four, we could suddenly understand what he wanted for Christmas as he mastered his mobility and showed us what he could enjoy. He shook and rustled the tree branches, giggling as ornaments rattled and fell. Turned them over and over in his hands. Ran his fingers through the fir pines. Push himself to the front of the TV to watch the Christmas films. And I mean right at the front, so the pixels burned his eyes. Rush round on Christmas morning stealing his cousins plastic, bright, noisy toys from their piles, their clutches. Messing with the bottles of booze stacked up, rattling the corkscrew. Crunching and tossing aside piles of wrapping paper. Hiding and weaving in and out our legs at the dinner table. And his health gave him some respite.

The magic was back, but better. Clearer after the storms. This was RD’s Christmas, and we had had to learn gratitude for the new normality. I wish I could zoom back a year, tell myself, “Hey, slow down. Take this all in. Breathe deep.” But who knows, I probably thought I was. In amongst pregnancy after loss, working and day to day everythings.

This year. This December. I want to rush round and pull back some of that. Decorate the house to an inch of its life. Foster DD’s enthusiasm, even though I wonder how much this confuses her too. The ever aching void of life without him. Fill it with tinsel and tat. But every twinkling light, every brass band, every handmade ornament from previous years, every pair of Christmas pyjamas hurts my eyes. Because they mark his absence.

I suspect this Christmas will be calling upon the early years of survival, hanging on to DD’s coat tails, and marking the change in all of us.

And no, I will never get a frigging Elf on a Shelf*

*Unless DD demands it, as I bend to her wont

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The night RD lay between wolf and I, taking three breaths, missing three. The night when each time he paused, I paused, my mind raced. It ping ponged: how could this really be happening, don’t rush it, breathe it in, take away his pain, now. Time hung on elastic- too painful to live through and yet not wanting it to conclude.

To cope my brain tried to float: what day is it? When is the first day of school term? When is DD due to start preschool? When is my period due?

I knew the answer to the last one: tomorrow. You see, we had booked a last minute holiday for all of us when RD’s bloods had given us that last breath. I did it almost to test myself; never quite sure that we’d make it but enough to show hope in the future. The week when he declined I’d been thinking about packing on the Monday, for the following Monday, in the way we always had to with RD.

RD passed away early that morning. He was cleaned, dressed in fresh pyjamas, and wolf and I carried him down the corridor to the little room. My mind had calmed, hit by shock and sadness. And I thought, oh, today is the 5th. That unmistakable ache wasn’t there, the regular as clockwork start.﻿

Later in the morning, wolf and I decided to take a walk. Except we knew our destination- buy a test, take it, put our minds at rest, move forward. There, bright and strong, two vibrant fuschia lines. Fuck.

There was an overdue pause as neither of us knew what to say. Congratulations? More expletives? Do we tell anyone? Do we need to contact the hospital, to see if the doctor who saw us after Tiny and their sibling remember us? Remember the potential strange condition they mentioned and what should we do? All on the day, within the morning, that our eldest son had died. I’ll say it again, Fuck.

Each week that has passed with him gone has been the passing of another milestone of life for this baby. I live in sphincter clenching worried ambivalence. Make no sense? More of my hormones later.

I had this thing, this weird thing, a thread that played on repeat on my mind when pregnant with Tiny. One In, One Out. The connection to that pregnancy, or being pregnant again, always felt somehow intrinsically tied to RD’s life. I can’t explain this. I don’t have faith to rely on. But I do question whether everything is actually mapped out for us and we’re subconsciously following.

So when we lost her, at 20 weeks, or in fact at around 15 weeks unbeknownst to us, I thought that’s it! I was right to be worried. And then falling pregnant again so quickly after felt like hope, like things might get back on track, only to fall further with that miscarriage and RD starting his kidney failure journey so soon after.

And then this, altogether shocking and yet somehow not. There’s a little seed in me somewhere that is grounded in this and believes in being able to hope. And then there’s bastarding life experience which has ground me down, and makes me couch every sentence with “all being well” and “if we get that far.”

I’ve wondered whether to come clean about this pregnancy at all. In fact, until today’s scan, which I went in fully prepared for them to tell me my baby had died, I thought I’ll never really tell. Because somehow speaking your hope and joy out loud gets you smacked back down again. And I still have 24 more weeks of pregnancy to get through.

But here’s what I feel I’ve learned: that all life, from conception, deserves to be recognised. Deserves to be treasured. Needs to be talked about. Because love starts the day those two lines appear and continues way beyond death. It will continue for my entire lifetime. I am mother to five children.

Now, about those bloody hormones.

Here’s a list of things that have made me cry:

John Lewis Christmas advert. Not the ACTUAL advert, but the very notion that they had made another one and it would be coming soon. The actual advert, meh.

The Ikea advert with all the lights. Half an hour of heaving sobs. Every time.

The dog pooing in RD’s bedroom. Oh, I’ve mentioned that before.

I hate all smells. Wolf was especially pleased with his likening to “smelling like a charity shop.”

I have convinced myself this baby is dead because:

I’ve been sneezing too much

My bump isn’t quadrupling in size every second

DD accidentally kicked me in the privates, hard, when playing our ‘chase each other round and kick each other’s bum’ game*

Like this:

Yep. In fact, he’d also nibbled his memory box, and had a wee too. And DD was opening and slamming his door whilst refusing to get dressed out of her pyjamas.

I stood there helpless in my towel post-shower, cold and fucking miserable. My husband was busy vacuuming downstairs as I’d already had a go at him about the state of our hovel this morning. You could say I was a victim of my own success.

At that moment a precipice opened up beneath my feet. Should I jump in and unleash ten shades of unholy hell at everyone, my face twisted, red and streaming snot and tears? Or should I decide that actually, this is pretty funny. The expression if you don’t laugh, you’ll cry (and probably never stop today) hit me square round the back of the head. I managed a hybrid, which was 70% snorting.

Yesterday, en route to Mumsnet Blogfest I phoned home, given I had abandoned wolf solo. He’d apparently ‘turned the house upside down’*- or man looked- for DD’s swimming costume that morning and in desperation had sent her off swimming with my mother in her dead brother’s swimming costume.

*Given the hovelesque state of the house mentioned above, maybe there was an element of truth.

And that time I actually did laugh, loudly. And recanted the tale. Because there is a lot of light in this shade.

Just as a ridiculous hunt for spray that might stop Eric pooping where I don’t want- an anti sh*tting spray if you will- and the confusion in the choice, had me sobbing in the aisle of Pets At Home.

Obviously I forgot RD’s room.

Back to yesterday, and Blogfest. So, I didn’t win Best Campaigner. And whilst it would be a big fat lie to say I didn’t feel disappointed, it’s not because I expected to win. It’s because my emotions and nerves simmer so close to the surface right now, I’m surprised you can’t see the bubbles in my hair follicles. I didn’t expect not to win not through some false modesty, but because I’m not sure I believe in myself as a campaigner. Or know that I am.

What I do believe is that the votes that made me a finalist show the importance of real life story telling. Of letting people in. Making connections and narcissistically feeling relatable when thankfully my circumstance is pretty rare.

There were some extraordinary and empowering speakers yesterday; authors, comedians, actors. Everyone with something to impart and share, and so much from personal experience. The best examples of light within shade

Grief is bonkers and nonsensical. It means that I can put on a nice frock and new boots, stand and chat and thoroughly enjoy myself yesterday, and today left me exhausted, flat and unwashed. ﻿

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I don’t want the clocks to go back, the hour to change. For life to show me time moves on rampantly, blindly.

I wish Halloween would do one, the ephemera of death hanging around as if to taunt me.

But then it’s the start of the festive season. I’ll struggle to find my pocketful of Ho Ho Hos.

I have a freshly turned 4 year old brimful of excitement and wonder at all the promise of the season. Who will see us through each day, but barely give us space to breathe in the void RD leaves behind.

The days trip into each other in numb exhaustion. Bar the hours between 2.30am and 4am. They are painfully long and quiet.

There is happiness and freshness in each day, and it’s been a really glorious autumn, but I’m like a sponge finger dipped in sadness. That bit of the trifle that holds it together, until pressed.

Then there’s days like today. Days where I selfishly need solitude. To do an ugly cry. The ones where you feel like your eyelids might turn inside out. When you don’t recognise the primordial cries coming from your throat. And yet, it just brushes at the pain. Barely dents it.

When it’s hard not to let anger in. When you feel that decisions are made on assumptions rather than questions. I can tell you this, how are you? is never defunct. I can’t promise to tell the truth, or a torrent of emotion, or perhaps worse, a nothing because at that precise time, words can’t really convey how it is. Well, maybe a choice swear word or something.

Grief seems to involve fine tuning forgiveness. Probably because after the event you realise you’re not angry at that event at all. You’re just fucking angry that your child died. Seven stages of grief or whatever right there.

So I hope people forgive me. Stick with me when I withdraw, or throw stones. Or just am myself but a bit hollow and vacant. I want to hear all about you.

I’ve also realised I’m barely touching the events of the last year in actuality. I’m just circumnavigating this huge gap in our lives. I watched the finale of The Fall (slight spoiler alert if you’re saving it). He strangles a man, and then suffocates himself. And suddenly this portal into the time RD eventually stopped breathing opens up and it’s so glass shatteringly painful I feel like all my insides have just fallen into my feet. Which has just happened remembering that memory of a memory.

Some things are moving through time and changing for the better though. Eric, our new puppy, is growing up and calming down, and DD and he are less of a petrol and match combination. We can now take him on (short) walks which means our four walls feel a little less close.

DD seems to becoming a little more emotionally aware. Rather than telling me to stop crying, or to not cry, she offers a cuddle and closeness. There are still the epic boundary pushes, and she’s working through the Why? stage, but her little giant mind is obviously making sense of things.

Current obsession: baby in her tummy.

“Mummy, how does the baby get out my tummy”

I am navigating the m1 in half term traffic. I can only figure that honesty is the best policy.

“Well, when RD was a baby in my tummy, he needed an operation to come out. When you were a baby in my tummy, you came out my noo noo.” (Midwives all over now contemplate whether it should be NNBAC)

Disgusted noises from DD.

“Well, I’m going to hospital to get my baby out tomorrow, okay? It will have sore bits like RD”

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Yesterday morning I dreamt of RD. It wasn’t like the dreams I’d have of him sometimes when he was alive, where he could walk, or tell me he loved me with words but I guess still as much of a flight of fancy.

He was in a garden, sat with a toy. A warm day, but not too hot or sunny. His favourite kind. I went over and sat next to him. He rested his head on my knee and told me mumumumuum just as he did. I could see and touch the beautiful curve of his nose, the light dance behind his eyes. Just as it did. And I thought “they’ve got it wrong. He’s still here. We’ve got a little longer.”

I was angry I had to wake up. Squeezed my eyes together and tried to empty my mind but the elephantine rumble of DD running through from her room broke through. And I struggled not to snap at her, it’s not her fault. Let her clamber on top of me, knees and elbows clashing against my bones or unmentionables. I was still between two places, which is generally how I am at the moment. Trapped in thoughts and dreams and sadness over RD. Snapped into the present by a demanding nearly four year old, puppy and the fact that life has to go on.

Real life, the one that involves wedding anniversaries (yesterday), birthday parties for DD and her new preschool classmates (Saturday) and holidays (today). Where I battle the overwhelming desire to just stay in bed because I know it helps to get up and out. To talk to people. To play a character at times. To come home again and still feel the raw shock that RD isn’t here anymore. To pore over photographs and videos, wanting to climb inside. Lamenting that there will be no more.

It’s exhausting. I realise at times that during a thought of him I forget to breathe. I talk to walls as though he’s just on the other side. Tell him I miss him and love him.

I walk past his photos everyday, they’re everywhere in the house. But in one moment I’ll have to go back to touch at the image of his hands. Miss them carefully inspecting a toy, trying to locate a button. Such long skinny fingers, soft as silk, inquisitive.

I miss him when I realise we are no longer carers. Absence marks the whole of the person, the good, bad and ugly. To pack for a holiday with RD involved 24 hours prior to leaving the house of preparation. To be honest, it would be on my mind for weeks. Where would he sleep? Would we take a wheelchair or pushchair- one more preferable posturally yet the other better for getting out and about. Calculating how many medicines, nappies and feeds to take. Then adding in extra for scenarios where he would be ill- extras of everything plus pain relief. Feeds replacement. Chargers. Toys. Seating. There wouldn’t be a square inch of the car not utilised.

But we’d get away and generally all would go well. Or maybe overall. I don’t know anymore, I became accustomed to allowing the good moments to overwhelm the hard. Because that’s what parent carers do. Adjust to your new normal.

And our new normal is three cases and some food. Maybe a few toys, general entertainment for DD. We can get in the car and stop where we like. Not worry about either carrying RD or unpacking the car to retrieve whatever form of wheels we’d chosen for him. Not to have to go somewhere that wouldn’t be too busy, would mean we could put him on a longer feed and somewhere we knew had changing facilities. This still makes me sad. I miss us navigating that, trying to be inclusive as a family.

DD made sure she made us know that in fact it wasn’t going to be easier at all, and set herself on a mission to be as difficult and challenging as possible as we packed. And made a song, a tuneless song, out of Are We Nearly There Yet? on the 5 hour journey. And that was a highlight. You’d think I’d be patient, calm and grateful for my living offspring, given I spend a lot of time worrying about something happening to her. But no, I can confirm I lost my shit several times.

I was having a chat with a wonderful woman dealing with a very similar scenario, in fact her son passed away within a day of RD. Because of our children’s disabilities, you learn to live day to day. To not project too far forward. So in a way, as time moves forward, I won’t be grieving predictable events- learning to drive, graduating school, getting married, having children. And in fact, their future that could appear daunting in its planning; who will care for you when I’m no longer able to? has gone. It’s not saying in any way it will be easier, it’s just to highlight the yin and yang of this life we lead.

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From the minute you wee on that stick, or multiple sticks, in that heart pounding moment you wonder who or what is going to happen to you. You, as the individual, is suddenly growing another. Your body, your mind, your relationships, your identity. You know for sure that change is a coming.

No matter what happens, having both experiences, you are changed in those three minutes.

Susie Mesure has written an article this week which feels like a ham fisted attempt to neatly divide mothers into tranches, and a review of what being a “mummy blogger” seems to mean to her. To be honest, I struggled to find a point, and mostly it boiled my p*ss. I found it patronising and divisive, praying on those insecurities we feel at the moment we lose our pelvic floor and our sanity.

More than that, between alpha, tiger, smug and fml mums, there is no mention of the children. That they who shape us are less than our reactions. What’s that expression? Be kind for everyone is fighting a battle you can’t see.

But I’m thankful of it as a platform. A moment to consider what I share and portray, what I tidy the edges on, filter and gloss. I’ve been nominated for this mumsnet award you see, for Best Campaigner, and whilst I am honoured and flattered, I wondered how I ended up there. In that camp, with amazing women who campaign fearlessly and doggedly. I probably should have tried to be funnier. What I don’t want is for Best Campaigner to feel like shorthand for Really Sad Story in our instance.

One of the things that I’m having to come to terms with now, after RD’s death, is that I’m no longer a mother of a disabled child. A parent carer as I so often would have to fill in on forms. That now, in a snapshot, the years of day to day care; nearly 6 years of broken nights, tube feeds, medicine measuring, nappy changes, therapies, have gone. It was and is a badge of pride, all that my beautiful son taught me. So now my identity feels so altered. And we bought a puppy so that we had more broken sleep and conversations about poo.

It’s made me realise what I’ve campaigned for. And will continue to. Disability and all I thought I knew petrified me when pregnant. When I realised that I would have 100% responsibility of the child inside of me; but what if that was lifelong and unending? There was no reason to think it would happen to me, to us. But it did, and I will be forever grateful for all it taught me. Patience, compassion and some serious black humour.

I believe it taught me how to deal with baby loss. In an effort to not sound mawkish, I will just say that being grateful for life was and is where I try and find my way back to from the gaping hole of loss. There is a type of grief that you experience as you move from the loss of What You Hope Your Child Will Be to acceptance of the diversity from that. It isn’t comparable to the grief I feel now, but certainly touched the same places of heart and mind.

So, I will continue to campaign the concept that whatever happens, it will be alright. That your universe can be knocked off its hinges, but you will find your way back to you. Reach out, learn, support and all will come full circle. And to wear your favourite lipstick. Because right now, it’s what I most need to tell myself, sitting in RD’s room. In clothes that are only a hairs breadth different from pyjamas, holding his clothes to my damp cheeks. That I’ll one day find a way back.

Whilst writing publicly isn’t all heartfelt altruism, I do really hope that by sharing, by writing out loud how this is and how it will continue, will help others.

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It’s like a metallic tang of blood in my mouth, and yet none is there.

It’s as if someone has dug a hole in my sternum, and I clutch at my chest trying to stuff my tshirt in there.

It’s as though my eyes could burn through a wall, the sky, the window as I realise they haven’t blinked, just streamed.

It’s sometimes like it hasn’t happened, and I feel I have to force myself to remember seeing you still and colourless, in the most peaceful of dreams.

Sometimes I just don’t feel anything, and I wonder if that’s normal. Or when the pain will come again. Or a fear that it will knock me down and I might not get up again.

I feel like I could vomit up my heart, but don’t want to, as yours is now in there too.

I think of all my babies. You, my first. Your sister, who I want to hold close but struggle with the energy to parent. The ones that we never knew outside of hospital.

I wait for you to come back from school, from respite, wherever you are that isn’t here. Even though I know.

I’m trying not to question, not to let the guilt in. To know that you loved life right until the last few days, and that this summer has been the most glorious gift but I keep feeling this resolve falter. Because I’d do anything to have you back.

I soak in the love for you, for us, from others. But I also wish for the peace of just you and I again. Pulling my hair, grabbing fistfuls so I would kiss you again. Pulling my hand to your head to rub your moleskin hair.

It’s so, so quiet now we’re back home. No noisy toys buzzing and singing, no chuft chuft of the wheels of your scoot. No flicking of the drawer handles or banging of doors with your feet.

Your room feels still, stagnant. Your bed still smells a little of wee, and yet I lie in it and breathe it in.

I lie there and remember the last time you were in this house, screaming. And I’d had to give your more and more midazolam until I carefully carried your floppy body onto the ambulance gurney. Still hopeful that we’d sort this, right it. Whispering for you to stop crying as my tears wouldn’t stop.

The day starts and I feel like I can’t. The nightmares that are too real roll into the day.

But you know me RD. You know there’s still lipstick and laughter that punctuate the day. The memories hurt because I just want more.

And even though I will want to jump in and swap places on the day we have to celebrate your life, I know that it will be right and fitting for you. When you’re settled on that place on the hill, with the breeze in your hair that you loved so much.